BonnieLou1234

[BonnieLou1234]

Thank you all for replying to my message. Just coming to terms with PSP as only diagnosed a week ago. Live alone. Am really scared. My next door neighbour has Parkinsons.

BonnieLou1234

[honjen43]

Hi BonnieLou

Contributions to this site come from all over the world: USA, UK, Canada, India, Europe, Australia and New Zealand, and others.

Which country do you live in? If you give a few details, you may find there are others on this site who live nearby.

You can then seek out their posts and find information relevant to your area, such as specialists names, research organizations, how to get funding and assistance, and you may find there is a support group you can get in touch with.

You mention that your neighbour has Parkinsons. Does s/he go to a support group? If so, it may help you to go and see what contacts you can find there. You may find support here for people who have similar difficulties, problems and questions to you, and talking to them may help you understand and improve your own wellbeing.

My hubby had CBD and found the Parkinsons support group useful, and most supportive. He was invited to join the group and to take part in the Dance for Parkinsons class. He never danced with me before he was sick, but he really enjoyed this class and was eager to keep going! We found there a group of happy people, all doing their best to continue to enjoy and get the best out of life! They were not sad or gloomy despite their illness.

I can understand how you feel, being faced with this diagnosis alone. It compounds your feeling of panic and you have no-one to talk to about.

You can do a number of things to help ease your fears.

* Give yourself a nudge and tell yourself 'it is not the end of the world just yet!' Start fighting back with thought and action. Don't panic; get motivated and ask for an exercise plan, walk, dance, be active because it will help you keep active for longer!

* You can talk to us! We all know and understand the fear that comes with this diagnosis, and some of us have a long experience of dealing with it as carers, and we are used to 'rants' on all topics, and offer whatever support is needed. There are also a number of contributors who have PSP and CBD who continue to post and offer support, ideas, and laughter.

* Talk to your neighbour! You sound like you don't know them very well? Get to know them! You may find they are still "alive and kicking" and would relish someone to talk to who can understand their illness. They may equally be able to offer tips for you to think on to help you manage tasks that you may find more difficult than before.

* Talk to family, friends and a lawyer. Get the nitty gritty stuff done of making a will, power of attorney, get finances in order, give some thought on how you feel about future treatment as things progress. It is important, and not maudlin!, to do the legal and financial things now while you have ability and clear mind.

* Make a "bucket list" of the fun things you want to do while you are well enough.

* Start ticking them off! Pick the most important one and head off to the travel agent and go!

* And if things get on top of you, ask your doctor for help! Help him to understand PSP if he has not heard of it!

We are always here if you need to rant, scream, or want a virtual shoulder to cry on. We are also good at giving virtual hugs when most needed!

Big hug

Jen XXX (( ))

[Toddet]

Hi BonnieLou

Our hearts go out to you.

The reply from Jen is really good advice.

My husband has PSP (diagnosed as Parkinson’s initially). Please try very hard to stay strong and as positive as possible. This isn’t easy at all, particularly when you have just had the diagnosis.

A few tips:

. Do the practical things that Jen suggests ... the legal paperwork is key.

. Get on with living by living day to day and extending your network through support groups (if available). Plan trips and meet positive people.

. Do not focus on how long this illness lasts, or what can happen when. That will depress you. Everyone’s story is different. My husband is 6 years in, he walks the dogs, goes to the pub and out to dinner, he visits the cinema and theatre too. Ok his speech isn’t great, eating is slow and he has falls. But he is determined not to let this illness beat him.

. Find people who can help you on down days and that can include those of us on this site. You don’t need negativity now, positive practical people who will listen and care.

. A tricky one, but at some point learn to focus on what you can do rather than what you can’t.

. Be your own best friend, you will get tried, take care of yourself and also treat yourself to things you would not have had before (my husband is now eating his 2nd chocolate mousse of the day!).

You will read sad stories on this site where the illness has progressed. But take hope in that, by recognising how far you are away from that point and you have a lot of living to do before you get there.

Take care, hugs and best wishes.

Helen x

[honjen43 in reply to Toddet]

My hubby had chocolate drop moments with me at the end of the day! And ate far more icecream than before, even tho diabetic. Did him no harm!

Hugs

Jen xxx

[Doublereeder]

Hi BonnieLou,

Sorry to hear this and am not surprised you're scared, I certainly was a few months ago when my mum was diagnosed. She also lives alone, 4hrs away so I can't see her as much as I would like and I do worry a lot about her.

Jen's ideas are spot on. Don't be hard on yourself, focus on what you can do now and not rue what you used to be able to do. I've also suggested some more practical tips to Mum to try and help not just with day to day but also keeping active. These are:

* Make use of frozen chopped veg/ready grated cheese. Much easier to add a handful of pre-sliced carrots from the freezer rather than battle with a peeler and knife for half a carrot and less waste too.

* Have the chocolate mousses/creme brulee puddings/ice creams, life is hard, you deserve it. Have also noticed Mum's suggestions when we're out about the grandchildren wanting ice-creams in January is more about her desire than theirs, not that they complain!

* If writing is getting harder, maybe get some postcards or small notelets and write a small note to friends saying hello. Everyone likes snail mail. If your postbox isn't too far away go and post it.

*Is there anyone who can be a scribe? I have sent some letters to relatives where Mum isn't able to email/write as much any more so they're aware.

Hope that helps. Best wishes,

Fiona

[LuisRodicioRodicio]

Hi BonnieLou1234!

I'm sorry PSP has entered your life.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 7.5 years in which we lived with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to PSP patients and caregivers. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[Marilyn_cbd12]

Hello. I am sorry that you have to deal with PSP, but as so many have already said, you don't have to be alone with it. In early stages of my husband's CBD, I found local Parkinson's groups helpful for connecting with resources. We live in USA. PSP/CBD/MSA groups here are harder to come by. While we live close to a medical university center, neurologists won't share names of patients with these conditions because of privacy laws and so while you know there must be others out there, it is hard to get in touch. Neighbor with Parkinson's might be a good place to start. I am hoping that singer Linda Ronstadt, recently diagnosed with PSP, will create a public face for this in the US and help with fundraising and awareness. So much good counsel has already been offered in previous replies to you that I cannot add much. One thing though...if it is possible to laugh at anything, then do it! A sense of humor helps me to get through some experiences. Hugs to you,

Marilyn

[BonnieLou1234 in reply to Marilyn_cbd12]

Hi Marilyn

Thanks. Will endeavour to see my neighbour who has Parkinson's. Didn't know Linda Ronstadt is a recent sufferer of PSP. Hugs and Kisses to you.

BonnieLou1234

[Karynleitner]

💙 You will find love and support from the wonderful people here. They are knowledgeable and kind. Sending a big hug.

[SewBears]

It’s really scary at first but the more you read up about it and come to understand that no two people are alike the easier it becomes. It’s living in the now and cherishing what you have is what matters. Everything else can be put on hold.